Monthly Archives: November, 2012

Chronic Illness vs. The Apocalypse

“It’s the end of the world as we know it and I feel fine…”                                                                                       – R.E.M.

Being a worse-case-scenario junkie, I have often wondered about how the world could end. Will it go down in a nuclear holocaust creating radiation mutants? Or possibly a virus that goes global before a vaccine or cure can be discovered, leaving a only those with a natural immunity alive? Or, my favorite, a zombie plague sweeps the globe? It is pure imagination for me – unlike some reality shows like National Geographic’s Doomsday Preppers.

I have often thought about what I would need in order to survive. Do I have the skills and the perseverance to adapt to a new set of rules and pitfalls? Since being diagnosed with multiple chronic illnesses and placed on a regimen of daily and rescue medications, my confidence in being able to survive has drastically diminished. Think about it. Could we survive without our medications? How long would a diabetic last without insulin? How would people with a mental illness last before purposefully or accidentally getting themselves killed? How would people with chronic pain manage to hunt their own food, build their own shelters, or runaway from a swarm of zombies or gang of marauders? Sure, we could muddle through for a short while. We would try our very best to keep up. I can picture it now – pushing myself through the pain until one day I simply collapse with exhaustion and couldn’t take another step even with a pack of cannibals on my trail. After watching the character Lori on The Walking Dead die during childbirth, pregnant women are now on my list of people who won’t survive either.

It can be pretty gosh darn depressing knowing I would be one of the first to die in a post-apocalyptic society. I would be as useless as an iPod without any power. If I was a healthy, virile thirtysomething weeding out the weak links in my group of survivors, I would most likely kill off someone like me. Of course, there are a lot of healthy people out there who would be just as useless as me. I guess that would be the consolation prize…

 

Endless Search in a Sea of White Coats

The most disturbing part of having a chronic illness is find a doctor to oversee my treatments. Having more than one chronic illness simply increases that search exponentially. If you have bipolar, your get sent to a psychiatrist. However, psychiatrists are trained by pharmaceutical reps (and let’s face it – Big Pharm is the real driver of healthcare these days) to throw medications at their patients. They don’t have time for “talk therapy” or cognitive-behavioral therapy. They no longer seem to connect with those professionals who do. Don’t bother asking for a recommendation to a good therapist. The disconnect is an ever-widening chasm that few patients have the stamina to bridge. We are left to randomly calling therapists out of a phone book or, more likely, from the list our insurance companies offer up. We all know how well that works out, right?

If you complain to your family doc about migraines, they send you to a neurologist. But did you know that migraines comprise a small fraction of what most neurologist know? Most docs don’t even know that there are headache clinics out there that only deal with migraines and headaches. What a shock! How is a family doc supposed to manage our care if they don’t even know what specialties exist in the world of medicine? What are they actually learning in medical schools these days?

Now if you are lucky enough to have fibromyalgia (I know you can’t actually hear the sarcasm behind the word “lucky” in print), the knee-jerk response from most family docs is to send you to a rheumatologist. But wait! Did anyone ever ask the rheumatologists out there if they want to treat fibromyalgia? They only got stuck with it based on an outdated, obsolete definition of an illness that research has redefined into central nervous system disorder. WTF!!!

The bottom line is that family docs are poorly trained to refer patients with chronic illnesses. They pass their patients on to others hoping they don’t come back. Specialists, like most docs, are trained to run tests until something comes back positive for a disease. Then they cut something out or medicate the problem away. They want to cure their patients, not have a long-term relationship with them. And who can blame them? Modern medicine works best for those illnesses that can be cured. It is ever so disheartening to see the same patient over and over again without making their problem go away.

Chronic illnesses are the ugly step-child of the medical community. They require a lot of patience from both doctors and patients (no pun intended). Most illnesses that fall into this category are treated like that Whack-a-Mole game we all played as kids. Every time a new symptom pops its ugly head, the doc whacks it away with medications, physical therapy, or even some Eastern approaches that have slowly crept into our Western medicine. Is it any surprise that the patients keep coming back?

In the perfect world, there would be a cure for every illness. But since that utopia is out of reach, the medical profession should be more open to managing our chronic illnesses.

My Badge of Honor

I wear my mental illness like a Badge of Honor. It means I am different… I live a challenged life… I am a survivor. I have Bipolar Disorder and I am not ashamed to admit it. I have had it my whole life even though I was not diagnosed until age 23. It defines who I am. It was there to shape and mold me through my traumatic childhood, the time of life when everyone is struggling to discover who they are and what they want to do with their life. It has brought me to my lowest points in life but it has also fueled my best moments. It is a part of me like an extra arm sticking out of my chest. It is there even though most people choose to ignore it. It is not something we talk about in polite society. My parents taught me that our private lives – family matters, personal health, family drama – stay at home. One does not air one’s dirty laundry for everyone to see. That type of thinking made me bury my disease deep inside me. But you know what? I could only do that for so long before it started leaking out all over the place, staining every facet of my life life. The more I denied it, the more I tried to hide it, the more powerful the disease became until finally I hit a Rock Bottom. I can’t adequately describe what this looks like. It is different for every person because each of us follows a different path to reach it. It is not a happy place. For me, it was dark and lonely because by the time I reached it, I had alienated everyone who cared about me. I pushed people away with a vengeance. I crawled through life. I dragged my sorry butt from school to work to home and repeat. My grades suffered. My friends hated me. My boyfriend left me. My employer was collecting a pretty stack of warnings against me. And I hated myself – every night I cried myself to sleep. When a bipolar person is depressed, we know what failures we are. We know every detail of what we are doing wrong. We could write a dissertation on what we are doing wrong in our lives… But we have no control. We feel helpless against the wall we have built around ourselves, a wall we built one brick at a time until it is so high we can’t reach the top, we can’t see the sun anymore. When the control freak has lost complete control, that is when Rock Bottom welcomes us with open arms.

I am one of the lucky ones. My doctors were wonderful and the medications worked right away. The medications are not a cure though. I will live with this disease for the rest of my life – trust me, it reminds me every now and then that I am not always in control. The medications do not make the voices go away. They do not fix the problem in my brain. But they do slow everything down inside my head to a manageable speed. The impulsive voices and urges that try to rule my life have been slowed down for the reasonable side of my mind to catch up. My reasonable mind has the time it needs to counter the impulsiveness, the reckless abandon that wants to control me. The medications allow me to be the master of my our ship instead of holding on for dear life most of the time. I spent two years in talk therapy learning to accept myself as I am and how to regain control of my mind. Therapy gave me the tools to use against my mind’s alter ego. Cognitive-behavioral therapy taught me where my thinking was flawed and what to do against it. I was able to change the way I think to realize a New Normal for myself. It was a liberating experience! Instead of constantly playing the victim, I was finally in control. The first thing I did to celebrate this hard-won freedom was to kick out of my life everyone who tried to push me back into my old role. Anyone who continued to undermine the therapeutic process I was in was not worth having in my life. For me, that meant discarding my parents. They didn’t get it and they never would. They saw my disease as a sign of my weakness. They shed all responsibility for me when I was sick. They abandoned me when I arrived at Rock Bottom. They wanted nothing to do with me when I was at my worse. They lied to everyone about where I disappeared to when I needed to be hospitalized. I became a pariah in my own family. I could not and would not assume that role they assigned me. The day I decided to eliminate them from my life I felt as though I lost 200 pounds, like the mythical pink elephant in the room floated out the window. I was free to live my life the way I needed to. I was free to do the things I needed to do to be healthier. We cannot allow others to predetermine our fates. And we cannot blame them for it either. THE BOTTOM LINE IS THAT WE ARE RESPONSIBLE FOR OURSELVES.